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  • matthew55
    replied
    Hey Simon I'm 56 retired and have had ASL/MND for a year and a half I'm presently mute, bad muscle wastage and slowly loosing the use of my hands. My tongue is dead but I can still swallow saliva and plegm but I'm 100% tube fed and on home NIV oh and I need stick to walk to stop me loosing my balance. We are however all different and our progress is individual but the effects end up the same. 👍😉🤗😍xx

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  • Suefromwakey
    replied
    Hello Simon, my husband has one of the slower types of this disease - PMA - looking back his first symptoms were 2015 roll on to 2021 before final diagnosis,
    as Barry says you might want to look into the Voice Banking? - my husband got his headset/microphone for it Monday although hes not actually started doing it........probably because he still has a good voice, (he thinks he doesn't need to) but they store it for you for whenever its required - that will be another kick up the jacksie!

    Best wishes

    Sue

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  • Sarahw
    replied
    Hi Simon and welcome. The forum is a great support and can answer many questions - even those about totally unrelated topics! Sarah.

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  • denise
    replied
    Hi Simon

    really nice to meet you.

    love Denise

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  • Lynne K
    replied
    Hi Simon, I guess that we may have crossed paths way back. I lived in Liverpool and went to The University of Liverpool 1994 to 1997 to do Sociology as a mature student. I spent considerable time in the main library and sometimes studied in the English library (a quieter space).

    I hope that you can continue working for a long time and that you have plenty of support. Lynne

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  • Ellie
    replied
    A warm welcome to the forum, Simon.

    You must be well-read and clever, being a librarian with a few decades of experience under your belt, so we shall need to pull up our semiliterate socks for you 😂😂

    As Barry said, consider voice banking, if you haven't done so already.

    Long may your PLS continue in its present form.

    Love Ellie.

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  • Barry52
    replied
    Hi Simon and welcome,

    I also have PLS and symptoms began in 2011. Do you still have speech and if so you may want to consider voice banking?

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  • Bowler
    replied
    Hello Simon. Look forward to getting to know and chat with you

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  • Gordan1111
    replied
    Nice to know you Simon

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  • Simon D.
    started a topic Hi from me!

    Hi from me!

    Hi,

    I'm Simon. I was officially diagnosed with PLS on 20th May even though my symptoms started way back in 2012. Just wanted to introduce myself and get used to this site and how the forum works.

    I'm a Librarian at University of Liverpool and still working from home at the moment, thanks to Lockdown. I'm 51 and have been at the University since 1995.

    My diagnosis was relatively recent and, though I have had many of the symptoms for a good few years, in December last year my speech started to slow down and slur occasionally.

    Anyway just wanted to introduce myself with a brief couple of lines.

    Best
    Simon.
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